Survivorship: The Part We Don’t Talk About — But Should
I’m 11 years post my second breast cancer diagnosis, and I’m grateful every single day to still be here. I work five days a week, I show up, I contribute, and I keep moving forward. I’m proud of that. But I’ve also learned that survivorship is far more complex than anyone prepared me for. After Taxol, 5‑FU, and a DIEP flap, I now live with: permanent hair thinning, weight gain, early menopause, neuropathy, hand‑function issues, all‑over body cramping, heart failure, cataract, blocked tear ducts, damaged veins, and numbness from nerve damage. I’ve adapted. I’ve rebuilt not just physically but mentally/emotionally. I’ve learned to live in a body that’s different from the one I had before. But here’s the truth: we don’t talk about this part. Not with friends. Not with colleagues. Often not even with each other. We carry the long‑term effects quietly. We push through because that’s what survivors do. We’re grateful — deeply — but gratitude doesn’t erase the challenges. I’m sharing this to encourage honest conversations. Because survivorship is real work. Because so many of us are navigating long‑term effects in silence. Because speaking up helps others feel less alone. If any of this resonates with you, your experience is valid. We can be strong, grateful, and resilient — and still tell the truth about what survivorship really looks like.
Emotional support
I was diagnosed in April and have had a lumpectomy. Was going to be radiation next but my Ki67 levels are a bit high so having Endo predict test done. Oncologists are saying possibly chemo now. I am very anxious. Don't have much support. One daughter at home is autistic and the other has gone to uni so not home much. Partner and I separated so living separated under one roof which is so hard. Just need some support.Cryotherapy gloves/socks for chemo neuropathy – anyone in Australia able to lend or sell?
Hi all, I have metastatic breast cancer and have been on Abraxane since September (about 6 months in). I’m starting to get early neuropathy in my feet. My hospital doesn’t provide any support around cryotherapy, but I’m keen to trial gloves/socks during treatment to see if it helps. Before I go and spend $200–$300 on a mefucal grade set, I wanted to ask: Does anyone in Australia have a pair they’re no longer using and would be open to lending or selling? Or any recommendations on what actually works (vs what’s a waste of money)? I also have Hashimoto’s disease & bad blood circulation, so I’m not even sure how well I’ll tolerate the cold—another reason I’d prefer to try before buying. I’m on the Central Coast NSW and happy to pay postage or contribute towards cost. Really appreciate any help or leads—thank you!Chemo dilemma
Hi I'm struggling to get the information and support to make a decision on whether to have chemo prior to radiotherapy. Wondering if anyone has any thoughts from a similar journey or ideas of where I can go for help? Her2 negative hormone positive 15mm grade 2 on biopsy grade 3 following lumpectomy with clear margins and clear lymph nodes. Ki67 was 5-10% at biopsy not tested on tumour so possibly higher. Would like genome testing advised to have ProSigna which is for post menopausal women I'm pre-menopause (?!) Struggling to get hold of anyone to give me answers or advice I understand its my decision and I'm in the borderline/grey area but want all info possible to make an informed decision 🤔
Newly Diagnosed
Hi My name is Victoria, I'm 42 years old and I have been newly (well, 5.5 weeks ago) diagnosed with breast cancer. It is is located underneath the nipple on my left breast and it is invasive ductal carcinoma, ER+, PR- HER2-, Stage Two. (Sorry if I don't have all the details but that is what I have interpreted it as). The tumor is 2.5 cm. I have seen my surgeon twice and I will be having a single mastectomy next week some time followed by 6 months of chemotherapy. We had discussed a lumpectomy so he could try and save the nipple but I opted for the mastectomy, just for a clean break. I'm dealing with it okay- I'm a bit concerned I haven't cried yet- and everyone else around me is very supportive and very shocked. I just wanted to introduce myself and hopefully be able to contribute something to these groups. Thank you Victoria
67 Male Metastatic Breast Cancer
Good Morning My 67 year old dad was diagnosed at the end of February with Her2 negative breast cancer. He had a mastectomy of the left breast and sentinel lymph nodes removal in March. A week later he had a second surgery to do axilla node removal as 3 of the 5 nodes removed were positive for cancer from the first surgery. The second surgery removed a further 17 nodes all were negative. He had a PET CT scan just before first surgery which came back all clear except for some haemangioma which was not mentioned to us at the time. He was classed as a 2B stage and referred for chemo, radiation and hormone therapy. Things looked positive. At the first appointment with the medical oncologist she booked dad in for chemo, but also mentioned that the PET scan he had done previously showed an area in the T 1 of his spine that should be investigated further as it could be a possible metastasis or a haemangioma. No idea why the breast surgeon missed that in the PET report. Dad did a MRI which unfortunately showed possible metastasis in his T1, T6, T9 and L1. He then had a bone scan which showed same results along with 2 small spots on his ribs. Oncologist has canceled chemotherapy and radiation before it’s even started and put dad on tamoxifen and abemaciclib. He will start denosumab bone injections in about 2 months as he had to pull 2 teeth out to be able to get dental clearance for them. He did a bone biopsy of his L1 yesterday even though oncologist was adamant he didn’t need to do it as the metastasis is confirmed with the scans. Results are pending. His bloodwork is ‘normal’. No radiation has been recommended for now as dad has no pain. The last 2 months has been an emotional rollercoaster. There is very little information out there on male breast cancer. We’re unsure why the PET scan was cleared by the breast surgeon but it turns out there is actually metastatic disease on his spine and ribs. We’re not sure the wait and see approach is ok with us. Do most metastatic breast cancer patients receive chemo and radiation or just hormone blocking therapy. Also not happy bone injections are delayed for 2 months but nothing is replacing it for now. We’re tempted to see another oncologist for a second opinion on treatment. What are your thoughts on dad’s situation?
Grade 3 Oncotype Test Chemo decisions
Hi all, I’m in the challenging time of making decisions about chemo and would love to hear experiences from others journey particularly with any similar cancer. I have had lumpectomy on left breast results showing- Stage 2A invasive carcinoma 25mm Grade 3, HR+ PR-HER2- with lymphovascular invasion but all 13 lymph nodes sampled as clear. I am 39yo and very active and healthy (apart from this)! I pooled my savings to get the oncotype DX ordered- I am now waiting for results. (Still can’t believe we have to pay $5000 for this). I understand the Grade 3 PR negative and lymphovascular invasion detected are likely risk factors that tip towards benefits of chemo. But I have been reading more about the effectiveness of hormone therapies like OS+AI and that perhaps I could avoid chemo. I will let you all know my score when it comes back- I hope it’s low but if it’s high I’m facing such hard decisions that any similar experiences may help! thank you
Hair Loss Advice
Hi beautiful people. I have just commenced chemo a few weeks ago and I am just starting to lose my hair. I have bought some hats and scarves but I would appreciate some advice on wigs. Looking at the possibility of a real hair wig? Would really appreciate your opinions. I live in the the Wollongong area. Thanks ☺️
